What Your Doctor Doesn't Know About Fibromyalgia

I was still suffering and without hope when I decided to write this book, the day I brought home some dog-eared, yellow-highlighted books from the house of a deceased woman I had never met. I had stopped at an estate sale only to find that the woman who had lived there was a 56-year-old woman with fibromyalgia. The neighbors who were there weren’t sure how she died; perhaps an overdose, they suggested. Maybe a heart attack. I bought most of her books even though I already owned many of them. I wanted to feel close to her. I could sense her desperation as I turned the pages, as she highlighted various remedies, every one a highly popularized course of action for reversing the disease. I decided then that I wanted to tell the truth about the hopelessness that FMS patients feel when their doctor’s explanations and lectures fail and about what happens when you have tried every therapy in print and still can’t control the pain. I was angry that conventional doctors had not diagnosed me correctly and ignored some of the early signs of FMS. When I complained of insomnia, wakefulness in the middle of the night, headaches, daytime sleepiness, aches, and pains, I think my doctors attributed it to the fact that I was female, menopausal, thin, and working at a high stress job. I was given antidepressants and Valium. I spent years paying for the advice of doctors who knew less than I did about FMS. Even after I was diagnosed with FMS, I spent hundreds of dollars looking for answers in many books that generally prescribed light exercise and a healthy diet. Finally I found the people who could help me – doctors who had done their homework, acupuncturists you could trust physicians who understood chronic pain and treated patients like human beings. An enlightened pain doctor once told me that she was confident that doctors would soon find a way to treat FMS, if they could only keep the patients alive long enough. At the time, I didn’t know she would be one doctor who was right. Too many patients have been sent to their deaths by an absolute inability to endure more pain, aided by well-meaning, but ill-informed, doctors who failed to help them by dismissing their symptoms, withholding pain medication, and failing to do a complete search for underlying causes. FMS isn’t listed on a death certificate as a cause of death, but it can be deadly. FMS patients die from drug overdoses, lethal combinations of drugs, heart attacks and strokes caused by unendurable pain, withdrawal from drugs, and other causes linked to FMS. Sure, it would be easier for me to write that we are all going to recover completely immediately. Too many times, the helpful books I read (and there are some that were not) didn’t seem to address the panic, helplessness, despair, and severity of pain I was feeling. “If we can just keep our patients alive long enough to find a treatment,” my pain doctor said once, sighing as she handed me a prescription for Percocet. This is the story of staying alive.

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